The Washington Blade - July 9, 1999
Kai Wright

Almost all sides of the HIV tracking debate agree that, due to rapid change in the demographics of HIV and AIDS, the city must begin to track HIV infection rather than AIDS in order to effectively combat the epidemic. The flap is over how that tracking should be done.

The question at the crux of the dispute is whether or not the alternative to a name-based system would function effectively enough to meet U.S. Centers for Disease Control and Prevention standards and, ultimately, to allow the city to gain accurate and up-to-date information about the demographics of the epidemic today. Under a name-based system, once a lab establishes that a person is HIV-positive, it would send the person's name to AHA, where it will be stored. Under the alternative system, a lab would assign each person who tests positive a code, or "unique identifier," and send only that code to AHA.

Public health officials and political leaders are divided on the answer, as are local AIDS service providers and activists. And everyone is waiting for Mayor Anthony Williams to make a definitive decision on how D.C. will proceed.

At a July 1 meeting, public health officials told representatives from the mayor's office, as well as representatives from a handful of D.C. councilmembers' offices, that the only reliable way for the city to track new HIV infections is by recording the names of people who test positive for the virus. The mayor has publicly stated his opposition to this sort of "names reporting" system in the past. But this week it was unclear whether or not Williams in fact will reject the health department's recommendation and order it to move forward with a unique identifier system instead.

According to Williams spokesperson Peggy Armstrong, the mayor "has not changed his public stance" in support of unique identifiers. However, Armstrong explained, he also understands the city's dire need to begin accurately tracking HIV infections. She said the mayor is taking his time to study how to best fill that need without making people with HIV vulnerable to breaches of confidentiality.

"Presently, what he's doing is he's challenged his staff to come up with a way to do that," Armstrong said. "He really did want to make sure that he's got all the information on this issue."

Armstrong said Williams expects to "take a leadership role" in directing public health officials on how to proceed in the coming weeks.

A number of D.C. councilmembers have publicly opposed names reporting, and David Catania (R-At-Large) said this week that if Williams does not act soon, Catania will introduce legislation mandating a unique identifier system.

"It's time for the mayor to fish or cut bait," Catania said. "What's it gonna be?"

Adding to the uncertainty, AIDS service providers and Gay and AIDS activists are passionately divided about whether or not there should be names reporting in the District.

Some warn that such a system would deter certain at-risk populations from getting tested and would make people with HIV vulnerable to both accidental and congressionally legislated breaches of privacy. For these reasons, Whitman-Walker Clinic's Pat Hawkins, the Gay and Lesbian Activists Alliance, and ACT UP/DC are pressing the mayor to reject Lewis's recommendation. But others ù including long-time AIDS activists such as Ron Simmons of Us Helping Us and Earl Fowlkes of Damien Ministries ù say the stakes are too high in the populations where the virus is spreading fastest for the city to gamble on an uncertain unique identifier system. They point to the fact that AHA has successfully tracked AIDS cases with a name-based system for more than 15 years without a single breach of confidentiality as proof both that AHA can be trusted with the names and that a name-based system provides accurate data.

Reading the CDC

One key part of the dispute has been differing interpretations of what the CDC has said about HIV surveillance. The CDC sparked the ongoing national debate on names reporting in late 1997 when it began sending oblique signals about its desire that all states develop name-based HIV tracking systems. The fear, then and now, is that ultimately the CDC will directly or indirectly deny funds for myriad HIV programs to states without names reporting systems. Lewis insists that the CDC has sent clear messages that localities will in fact jeopardize their ability to get federal funds if they do not develop a name-based system. Opponents of names reporting argue that he is far overstating the case and that, to the contrary, the CDC will help states develop an effective unique identifier system.

In fact, the CDC has made both statements. In December, the agency released a draft of its long-awaited HIV reporting guidelines for states. On one hand, the guidelines clearly and emphatically state that CDC will fund all HIV surveillance programs, be they name or unique identifier based. Eventually, the draft guidelines explain, the CDC will evaluate all state surveillance programs and cut off funding for the ones that don't meet "performance standards." The CDC said nothing at all about funding for non-surveillance HIV programs.

On the other hand, the guidelines just as clearly state that name-based systems are the ones "most likely" to meet CDC performance standards and that the agency "advises" states to use such systems. CDC said that, at the time, no existing unique identifier program met the agency's performance standards. (Only two states, Maryland and Texas, conducted unique identifier programs at the time.)

AIDS policy advocates opposing names reporting objected to the draft guidelines' wording and have lobbied the CDC to temper the portion pushing names reporting. But CDC spokesperson Kathryn Bina said this week that the guidelines "[have] not changed and [are] not expected to change. à We don't expect any significant changes in the final document." A final version of the guidelines is due out by year's end.

Lewis said that, given the CDC's stated preference for names-based systems, he is concerned that the CDC ultimately will judge only names reporting systems as meeting performance standards. He argued that since CDC has already determined that existing unique identifier systems don't meet those standards, it would be a waste of time and money for D.C. to head down that path. And, he warned, whether the guidelines say so explicitly or not, if the CDC rejects the city's HIV tracking system, federal dollars for HIV programs beyond surveillance will be jeopardized because the city will be unable to adequately demonstrate D.C.'s HIV infection rate.

But opponents of names reporting say that Lewis overstates the case. The CDC's director of HIV surveillance, Patricia Flemming, explained the CDC's position on HIV tracking during a private conference call with D.C. officials following the July 1 meeting. Catania emerged from the call insisting that the CDC will not require states to implement names reporting systems. He said Flemming told city officials that while the CDC clearly prefers that states use names reporting systems, it will not mandate that they do so and will financially support state efforts to construct whatever reporting systems suit their particular needs. Catania also said Flemming told the group that the CDC wants only that all states have some sort of HIV tracking system by 2002.

"We have been, I think, misled by members of AHA," Catania said, stressing the city still has three years to develop an adequate reporting system. Catania suggests the city first create a unique identifier system and, only if that system fails, then defer to names reporting. "The urgency that has been circulated around this issue is wrong."

Advocates divided

But Lewis asserts that the city cannot afford to bet on unique identifiers, regardless of whether or not the CDC will allow it to. He argued the city has a responsibility to begin collecting the most accurate HIV prevalence data immediately so that it can begin targeting the new face of the epidemic. And he said he doesn't believe a unique identifier system can provide that kind of data.

Lewis appears to have some AIDS and Gay community support in that assertion. Representatives from a number of community-based AIDS organizations, many of which once adamantly opposed names reporting, all voted to support names reporting at a January meeting convened by AHA. People voting in support of a names-based system included leaders of Us Helping Us, which serves Gay black men; Damien Ministries, which serves people who are incarcerated; the HIV Community Coalition; Metro Teen AIDS; and Transgenders Against Discrimination in the District, among others. (The votes by these individual leaders do not equate an official position of the respective groups.) Hawkins and GLAA's Craig Howell protested that AHA won the support of these individuals by giving a one-sided and disingenuous presentation at the meeting.

Nevertheless, some of those who voted to support names reporting said that a major reason they changed their view was they became convinced that collecting accurate data about their communities is more important than confidentiality concerns or concerns about deterring people from getting tested. Many of the individuals are from groups whose clients represent populations where public health officials nationally believe HIV is spreading fastest, but where there is little data locally to support that belief.

The Rev. Kwabena Rainey Cheeks, founder of Us Helping Us, attended the July 1 meeting. He said afterward that obtaining accurate data about how the virus is spreading among people of color so that the city can target programs at those communities is his first and foremost concern. Cheeks said he feels names reporting is the only reliable way to get that data. Earl Fowlkes of Damien Ministries agreed.

"If we don't have a real accurate system, I think we're going to shortchange ourselves," Fowlkes said. "And I think that's going to hurt communities of color and marginalized communities the most."

Maryland AIDS Administration head Liza Solomon has been a national advocate for unique identifier systems and insists that they do work. She says that once the CDC starts funding such systems properly, they will work even better. Solomon acknowledged that the Maryland unique identifier system did not run perfectly when the CDC originally evaluated it, but she said they have ironed out the problems and now expect it to measure up to CDC standards.

"We have evaluated our system. We have submitted our system for peer review," she said, "and we are confident that it will meet the performance standards."

Ironically, the populations served by the groups whose representatives voted for names reporting in January are the same ones that names reporting opponents fear the system will most deter from getting HIV tests. But Simmons, Cheeks, and Fowlkes all argued that as long as the city maintains and publicizes anonymous testing as an option, people will still get tested. AHA agrees and has recommended that any reporting system preserve anonymous testing.

Additionally, Fowlkes, Simmons, and Cheeks agreed with Lewis that concerns about confidentiality are irrelevant for people with low incomes. Anyone who receives medical treatment at government-run hospitals and clinics or via Medicaid or AIDS Drug Purchasing Assistance Programs already has to give a name, they argued. Given that fact, Simmons and Fowlkes reasoned, the government might as well have the most accurate information possible about HIV infections among those populations too.

"The system is going to know that you are HIV-positive," Simmons said. "This whole question of giving your name or not giving your name is bogus in some ways."

As of this February, according to CDC, 32 states and territories, including Virginia, were monitoring HIV with a names reporting system. Only two, Maryland and Massachusetts, were using a unique identifier system. Texas abandoned its unique identifier system last year because public health officials felt it did not provide accurate data. Several of the remaining states were considering one system or the other.
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